I've recently been diagnosed with pernicious anaemia after a low B12 blood test result, and then also testing positive for anti intrinsic factor antibodies. I was then given 6 loading doses of B12 which finished on the 24th March. I seem to be now having the same symptoms as last time, dizzyness, exhaustion, headaches being the main problems. I went to the Dr yesterday, who said that pernicious anaemia is a slow progressing disease, and my symptoms can't possibly be because of that. She then stated that the symptoms that originally brought around the diagnosis were also not due to pernicious anaemia because they also came on relatively quickly (I went from feeling unwell like with a virus to fainting and being unable to control falling asleep and hearing my heartbeat in my head within a month). She also said that as I was not anaemic originally (only with low B12), that it would not have caused any symptoms (and wasn't I lucky they had caught it early before it caused any symptoms!). She had no suggestions as to what is actually causing these symptoms, and started asking the classic GP fobbing off of 'are you under any stress at home or at work' questions. I found the fainting really scary, and don't want to have to get to that stage again before they will agree that there is something wrong that they need to treat.
So my question is really whether anyone else has experienced quick onset of symptoms? I'm also a really active person, and after the loading doses went back to cycling 16 miles commuting to work, going to the climbing wall, doing yoga, walking the dog, playing with my 15 month old son etc, so I'm thinking that I might have a higher B12 requirement than the average patient (who the leaflet they gave me said was over 60!). I also had a virus recently (toddlers seem to be endless suppliers of these!) which may have depleted B12 also?
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evilellie
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Thanks, yes I am a member, and have read a great deal of that info. Unfortunately that does not make me able to persuade the doctor I saw that I have any idea what I am talking about
Yes, my symptoms were, in hindsight, present for quite a while (three years or more). But I'd put them down to getting older, and they were pretty mild.
Then I had a colonoscopy last year - with gas and air. I didn't know that the nitrous oxide grabs hold of any B12 in the body and renders it useless. I blame that for the fact that my symptoms suddenly crashed.
Yes, symptoms progress slowly in most cases as B12 levels slowly drop. But I reckon there comes a point where there just isn't enough for the body to function properly - which is when symptoms become worse. I'm sure the relationship between B12 levels and symptoms isn't linear, but I've not read anything about that.
Note to self - read about the pharmacodynamics of B12.
That would certainly make sense. I had been catching a lot of viruses and being generally run down, but figured it was just down to having a toddler who picks up all kinds of baby germs! The whole 'slow progression' thing I think covers a lot of symptoms that we would just put down to something else, but there must be a point where it gets low enough that the effects become much more noticeable. That makes sense to me, but apparently not the doctor.
I finished my loading doses the same week as you and I am going back to the doctor on Friday (armed with all the information I've gained through this forum and the PAS website) to plead for my next shot (not due until June!) My symptoms have been slowly returning for over a week now and I refuse to go back to how I was feeling before.
My symptoms crept up on me for, I think, about two years but the final couple of months were quite scary as they increased significantly. I am not as active as you, but my partner and I have 5 children ranging from 4 to 12 years and I also work as a reception teacher, so an amount of energy is necessary! I am the type of person who just keeps going and I didn't notice how things were progressing until I simply wasn't able to function. Is it possible that this is what has happened to you?
Yes, I think so. I'm pretty sure mine was brought on from nitrous oxide use in labour, and then having my first baby, I would not have noticed being tired etc as a symptom since I would expect that kind of thing! It was only once they started to progress quickly that I noticed. I also like to be doing something all the time and keep going if I'm tired or whatever, but there came a point where that just wasn't possible anymore. Sounds very similar. I am also thinking I can't possibly last until June. Do let me know how you get on with the GP.
I also think that amount of children in your life must be more exhausting than anything else I could come up with!
Thanks yes I have seen that, but only after it was too late of course. There are a lot of things I would change about my whole childbirth thing if I knew then what I know now!
Complete waste of time going back to the doctor! She collected me from the waiting room and had to wait for me down the corridor as my hips and legs hurt too much to walk at her pace. I explained my symptoms had been creeping back and all she could suggest was another B12 test! I cried, and that really isn't like me, when she told me to come back in June for my next jab.
After my blood test, in just over a week, I'm going to try a spray and if that doesn't suit me I will learn to self inject!
Sorry, I meant to reply a bit sooner. I know exactly how you feel. The doctor I saw when I made this post made me cry too, as she just made me feel like I'd made the entire thing up in my head and would just have to wait until June (but even that wouldn't make me feel better since it was completely impossible that I could be getting symptoms of low B12) I have been using one of those sprays, and I do feel much better, though still a bit tired and dizzy particularly when I close my eyes, I'm able to function again, so it's definitely worth a try. I bought the B12 boost spray from Amazon (amazon.co.uk/gp/product/B00... It took a while to work though, and it's not such a powerful effect as the injections (which really picked me up after about the third loading dose). I've got a telephone appointment on Friday with the doctor who actually diagnosed me in the first place (the best I could do as she does not have actual appointments until sometime in May - guess she is more popular as she's more sympathetic and pro-active). I'm going to argue for two monthly injections as I am young and active and if anyone needs it two monthly it's going to be me! I am also getting some injectable cyanocobalamin from Spain just in case as I really don't like being at the mercy of GPs. I would like to be more in control of my own health.
Anyway, I do hope you manage to get something sorted out. Post again if you need to vent etc. I think it helps!
Thanks! I've just got to last the week before I try the spray... there's no way I'm going to skew my blood test and give her an excuse not give me the jab in June!
Hope you get somewhere with your doctor when you speak to her. If not, then you will yet another PA sufferer who takes control of their own health... crazy that we have to, but if that's the only way, then so be it!
Hi, look at b12deficiency.info there is information on there that tells you how to write to your doctor. Various scenarios are given. Hope it helps.
Thanks, I don't think I can write to my doctor. Actually I don't have a particular doctor. I'm covered by a very busy medical centre which covers a huge area, (unfortunately this means there is no choice as no other surgery will cover my postcode). It's kind of a chaotic place, and I think you need to be there in person to get any kind of response.
The practice will have a practice manager you can write to. Most of us continue to suffer for years hoping that things will improve. When you eventually have no alternative but writing that letter or self injecting as I have done you will wonder why you wasted all that time.
Think many people dont realise what is going on until it gets to the stage where you have a symptom which just wont go away and therefore go to the drs. I had loads that are within the b12d diagnosis but didnt know anything about b12 beforehand.
It may pay you to repost a question asking what you need to do now with regard to making the b12 injections work for you. There are other b's, folates, vitamins and minerals which we need to get everything up and running and working as best we can.
I had a similar experience with sudden onset symptoms. Now (having had a week or two to reflect) I realise they crept on over a long period, I have been saying to my husband for about a year that I feel like an old lady, if I sit for too long I get stiff and struggle to get out of bed with any speed, I really thought this was what getting older was like (I'm only 37!). Then a few weeks ago everything sugddenly got worse, needed every other day in bed, pain in my neck, ringing in one ear, breathless, no appetite etc. Maybe our bodies get to the point they can't take anymore and a crash happens?...hope you get the help you need from your doctors.
Thanks, that also sounds similar to me. I probably put a lot down to having a baby and the consequent lack of sleep! Then like you I got to the stage where I couldn't stay awake, fainted, hearing my heartbeat, totally out of breath, loss of appetite (the Dr I saw the last time around weighed me and I was down 5kgs lost in about a week) and that drove me to the Drs. It's good to hear that other people have experienced this after being told that it simply wasn't possible and I must just be making it up!
Oh me too. Suddenly it feels like permission to feel crappy! It's not in our heads or lack of stamina. I have 3 children and definitely know what tired is after all those sleepless nights, that has nothing on the exhaustion this causes. Very excited to be starting injections this Thursday. It's been a long 10 days waiting for them!
I think it's like the oil in your car's engine. Everything works fine as the level drops. After a while the level drops so low that the engine starts to misbehave somewhat. Eventually it drops low enough to cause severe symptoms, possibly including sudden total failure.
Your GP sounds like they have a poor understanding of PA. I had multiple symptoms in retrospect for many years but a sudden crash with crippling vertigo, falling especially in the dark or if I closed my eyes to wash my hair in the shower were what brought me to the GP. There was no way I would have ever gone complaining of tiredness. It was only when I got B12 which helped that I realised it was not normal to come home and need to lie down! Also that my eyesight had been dull as it got brighter and that fingertips don't normally get sore with iPad use!
If you keep a record it will help keep a track and you may realise things improve that you had not connected before. Some have had luck with GP by going back with symptoms diaries, support and guidelines but many decide to go their own way with extra sublinguals etc. Good luck!
Yes, the thing that swings it being B12 for me is the vertigo particularly when I close my eyes. It's very annoying. The last time I suffered with vertigo was after a concussion, and it took 3 months to clear up (in the end only after taking beta blockers), and drove me absolutely crazy. It's so hard to do anything when you feel this way. Thanks, I have bought some of the mouth spray to try too, though I don't think it's going to be as effective as injections.
Unfortunately sounds as if your GP is one of the many who thinks that the symptoms of B12 deficiency are caused by anaemia - its actually the other way round.
Whilst B12 deficiency can take decades to manifest - I can trace symptoms back over 40 years - the symptoms usually start to snowball once the deficiency starts to bite so it can seem as if things have got worse very suddenly.
I understand this as being because your deficiency is caused by an absorption problem - normally the body is very efficient at recycling B12 and needs very little - but the recycling depends on B12 being released from the liver where it is stored into the ileum and if you have a problem it is like having a leaking bucket - and you are going to be running out of B12 very quickly towards the end.
Something like 30% of the population develop significant neurological problems before they develop any form of anaemia.
Exercise is known to use up a lot of B12 so that also won't have helped. I personally findthat hormonal changes also taking a tole on B12 levels, as does fighting off any form of infection.
It's probably worth keeping a diary of your symptoms, more for personal reasons than trying to get through to your doctor though pointing them at this website might help get them to realise that B12D isn't anaemia
You could try other forms of supplementation if you can'tget your GP to give you B12 more frequently - or find a colleague at the practice who will authorise it.
Options are sublingual sprays and tablets, nasal sprays (work very well for me) and skin patches - though there are no guarantees so it is try it and see. You can also source injectable B12 from outside the UK if you want to go down the route of self-injecting but I'd recommend giving it another shot at finding a GP who will listen
I have just found out to my cost that a lot of exercise - both the gym type and the housework decorating garden type - can quickly deplete B12 levels. I have been SI weekly for a while and doing well on it, however my daughter is getting married soon so what with trying to get the house in order and trying to get the body in order I have upped the exercise considerably. After about three weeks All the old symptoms came back with avengence. Lesson learned and I'm now injecting every other day. How I would have managed on 12 weekly injections I don't even want to think about.There are some articles that say exercise depletes B12 (if you are on Facebook there is a really good support group with helpful files called Pernicious Anemia/B12 deficiency Support Group).
As gambit says there are many different types of spray/sublinguals/nasal drops you can try which I used for quite a while but found that SI worked better and was cheaper for me. You also need to make sure you take folic acid, potassium and use a magnesium spray to get the B12 to work. Something I wasn't told to do until about 3 years in!
Thanks for the advice. I am not willing to give up having an active life for the sake of a vitamin deficiency that the NHS is unwilling to treat (I'm only 34!). The NHS seems to treat everyone as though they are the "average" pernicious anaemia patient who is over 60. So I think I'm going to have to treat myself. I have tried one of the mouth sprays, but I'm not sure it's having any effect. Interestingly, the first GP I saw said I also had low folic acid, but not to supplement it before resolving the B12 issue as it would be dangerous to have high folic acid and low B12. I'm also not sure about the low folic acid thing as I'm vegetarian, and eat huge amounts of food with folic acid in (including a lot of rejected broccoli that was meant for my son!), so I don't really see how it could be low. I have never heard of magnesium as anything other than a metal - will have to look into that.
I think I'm going to look into self injecting too. It seems like what most people end up doing if they want to have a life.
If you treat low folate first it can mask PA symptoms but B12 needs high folate to work. They should be treating both! I can understand what you say about not giving up your active life style though don't know how you manage on one injection every 12 weeks with a little one.
I inject SC in my tummy and if you go down the SI route then keeping the folate magnesium and potassium levels right is very Important and there is a lot of help and information on the support group on Facebook.
Thanks, that's very helpful. I realised my sister in law is coming to visit at the end of the month. She used to be a nurse, and now lives in Spain, so she can bring some B12, and also show me how to self-inject. I will also get some of these other supplements (or a lot of bananas for potassium which we always have in the house anyway as my son loves them!) and will make sure I take everything together. Maybe the combination will also help the B12 injections last longer.
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